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Making Medicaid Work for Kids

Among the many issues children’s hospitals advocate for nationally, one stands out: Medicaid. Medicaid matters for kids because it provides health coverage for so many kids — nearly one in three children nationwide. Within the Medicaid population is a group of roughly 2 million children for whom Medicaid is truly a lifeline. These kids are medically complex meaning they have multiple conditions like cerebral palsy and congenital heart disease affecting multiple body systems. And they require medical care from as many as 10 different pediatric specialists located in multiple hospitals.

Unlike Medicare for seniors, which is consistent state to state, the Medicaid program varies from state to state making it very difficult and burdensome for families of children with medical complexity that travel for medical care across state lines. By working with Congress to introduce national legislation, children’s hospitals believe we can improve our care delivery system for this highly vulnerable group of kids.

Last week children’s hospitals achieved an important milestone in our legislative effort to reform Medicaid for children with medical complexity. Congressional champions Reps. Joe Barton (R-TX) and Kathy Castor (D-FL) co-hosted a bipartisan briefing to introduce the children’s hospitals’ legislative proposal to other members of Congress and their staffs. The proposal would create nationally designated children's hospital networks that take on the role of coordinating all the different treatments, specialists and locations needed to meet the needs of children with medical complexity. Expert regional coordination can streamline the delivery system to improve care and reduce costs. These networks will also enable building a national database to drive best quality outcomes for these kids.

The briefing consisted of a panel of representatives from the children’s hospital community including Anthony Putney who told his personal story of caring for his daughter, Lily, and why changes are needed to help his child and many others across the country.

Our next steps are to try to introduce legislation in the House to move this proposal forward, and to arrange a similar briefing for the Senate to start paving the way for legislation there as well. One way you can get involved to help move forward this proposal and impact the health and lives of millions of children and their families is to join Speak Now for Kids, share your own story, and encourage friends, family and colleagues to do the same.

Reps. Joe Barton and Kathy Castor (both standing) open the briefing with a few remarks. Panelists, seated from left, are Mark Wietecha; Chris Durovich, president and CEO of Children’s Medical Center Dallas; Daniel Plasencia, M.D., medical director at St. Joseph’s Children’s Hospital, Tampa, FL; and Anthony Putney, father of a child with medical complexity.

A shot of the briefing room. In the front row, Reps. Gus Bilirakis and Leonard Lance (both leaning forward) exchange comments with one another and questions for the panel.